Three days ago the White released a press release. The press release was titled "President Obama Commemorates Anniversary of Olmstead and Announces New Initiatives to Assist Americans with Disabilities". Like the good scholar that I am, I printed out the release for posterity. I then made the mistake of carefully reading what the White House had to say, got pissed off, balled up the release in my fist and threw it across the room. What did Obama say that got me so mad? The President directed Human Services Secretary Kathleen Sebelius and Housing and Urban Development Secretary Shaun Donovan to work together "to identify ways to improve access to housing, community services, and independent living". Moreover the President has decided to celebrate the anniversary of the Olmstead decision to launch "The Year of Community Living" as part of the effort to to assist Americans with disabilities.
Great. Mr. President. This is wonderful rhetoric. I am sure plenty of disability rights groups will send supportive emails and post this on their websites. Mr. President I bet you even got some wonderful photos of you and some obviously disabled person published. This may go over well with those unfamiliar with disability rights but it falls hollow with me. Political gamesmanship is all this is, a smokescreen. The reality is you have failed to support the Community Choice Act, the only real chance people with a disability have to escape the disability gulag. Here I refer to Harriet McBryde Johnson's description of the nursing home industry that has a penchant for making giant profits at the cost of human lives. The fact is as of today no real choices or at best very few exist for those that seek to live within the community instead of an institution. People with a disability are needlessly trapped in institutions that still dot the landscape of America. The best chance these people had to escape, to become empowered, was the Community Choice Act, and this is not going to be part of the health care debate. So I see the Year of Community Living as nothing more and nothing less as than rhetoric. The reality is the Community Choice Act is not important enough to rally around and push through the legislative process. This was a chance to help real people and instead the White House chose the easy way out. Mr. President you say all the right things in terms of disability but your lack of real action is deeply depressing. I voted for you because I believed you would act and instead all I hear are words.
Thursday, June 25, 2009
Wednesday, June 24, 2009
The Problem with Conservative Thinking
Although I come from a very conservative family, I do not share any of my parents political viewpoints. Indeed, when it comes to politics I keep my mouth shut at all family events. I never express my political views because I know they would be upsetting if not shocking to my siblings. What separates me from my family is political and personal. None of my siblings or extended family members encounter the stigma associated with disability. As many people with a disability can tell you, especially those with an obvious physical disability, disability is the perfect cure for a big ego. Just when my ego becomes over inflated a stranger will come up to me and applaud me for being able to get in and out of the car or even more remarkable being able to read. Wow, these strangers will say, you people are amazing. Ugh, talk about one's humanity being reduced to nothing.
The only family member I shared my political views with was my father. We were an odd pair when discussing politics. He was deeply and passionately conservative. He also knew exactly how much I deeply resented people seeing my disability first and humanity second. This, I told him, made my political views change radically. He respected my views but despised my politics. I felt the same way about his political views. I respected him but could not understand why he felt a man like Reagan was great. Reagan was great at giving speeches I told my father and deflecting the real aim of his politics: make the rich richer and the poor poorer. In reply my father would laugh and ask how this differed from any other man in a position of great power. In the end I learned how to respect political conservatives through my father. Since his death and the rise of the religious right this has become increasingly difficult. Thanks in large part to the influence of George Bush our country, always a conservative place, has morphed into a country where complexity is perceived to be bad and science is somehow not to be trusted. How we got to this state of affairs is way beyond my ability to explain. But here we are, a country of extremes where we seek out evil doers, George Bush's words not mine, and conservatives talk about compassion and love. This sort of talk makes my blood boil and sends my blood pressure through the roof. Thus I have taken a few days to calm down so I can write about an essay I just read by Helen Rittelmeyer entitled "Towards a Bioethics of Love: What Conservativism Can offer Disability Activism". The essay in question appeared in Doublethink Online and was discussed beyond the usual conservative avenues--in other words I did not go out of my way to get pissed off.
I do not know anything about the author. One article by her was more than enough for me to bear and I shudder to think of what else she has written. Based on her article and its tone her expertise in disability is restricted to the fact her sister has a genetic disorder. Her sister is as a result prone to seizures, non verbal with severe to profound mental retardation. In layman's terms, Rittelmeyer writes, her sister is a "10 month old mind trapped in a 20 year old body". I know of no one that thinks this way except for a few extreme transhumanists and thoughtless people that fail to acknowledge the humanity of all humans, those with and those without a cognitive deficit. It is clear the author loves her sister very much and unlike many sees no need to search out a cure for her sister's condition. I respect these viewpoints and wish they were shared by all. But we diverge when the author mixes the love she has for her sister with disability politics. According to Rittelmeyer bioethics and questions of disability are pressing and that she can "offer a conservative bioethics, one that sees love, not autonomy, as the basis of human dignity". Such sentiments mixed with politics are in my estimation nothing short of dangerous in large part because they conspicuously ignore the fact that disability rights are identical to civil rights.
The essay by Rittelmeyer does not begin to acknowledge must less accept a disability rights point of view. Disability is inherently bad, people with a disability needlessly suffer, are assumed to be in pain, physical and psychic, encounter endless adversity, and a diminished life. Moreover, disability is the defining aspect of an individual's life. There is no escape from disability. She writes "We cannot reduce a man to his disability, but neither can we look past it. Look past it to what? An imaginary person minus that disability?" Wow, no wonder disability rights remains grossly misunderstood by most people I encounter. At issue for the Rittelmeyer is dignity, human dignity, but what sort of dignity? Clearly, she and sadly many others cannot look past a wheelchair and see the human sitting in it for instance. This is the case despite the fact a disability such as quadriplegia is "less fundamental". What it is less fundamental from is not clear--perhaps her sister's condition? So what are people with a disability to do? In Rittelmeyer's opinion embrace conservative bioethics that require "the disabled and their families to show real heroism by accepting their suffering with some measure of grace and by swallowing their pride and accepting an unusual measure of dependence". Thus she goes on to note that "those who have had hardship thrust upon them have found some nobility in it"
Wow, civil rights and disability rights have been perverted in the name of love and conservative bioethics. The last thirty years of legislative initiatives, the independent living movement, and decades of activism have been replaced with an expectation that we people with disabilities need to "swallow our pride" and be "heroes". I see nothing heroic in having my civil rights stomped on. I see not reason to "swallow my pride" when treated like I am anything less than fully human. This is outrageous until I realized that some how "reasonable accommodations" have been transformed into charity and choice. The good person with a disability, the one with honor, accepts their stature in life: dependent, in need of hand out and happy for any societal largesse. The bad disabled person is one who demands equality: the right to get on and off a bus or airplane. Worse yet, expects to be able to vote, get into governmental offices and actually enjoy the fundamental rights all Americans take for granted. What Rittelmeyer wants is a return to an old era when people with a disability were trotted out a few times a year--Memorial Day, Veteran's Day, Mother's Day, etc.
Most troubling to me about Rittelmeyer's views is that she is familiar with disability issues. For instance, she raises a good point that some disability activists insist that disability is solely a social problem. That is disability activists are too closely tied to a rigid social model of disability. This point has been made by many within and outside the disability rights community. It is an issue, one that has not as yet been resolved. But this does not mean the social model of disability can be ignored just as the medical model cannot be dismissed. This nuanced point however is not going to be picked up on by the vast majority of her conservative readers who will think: "finally a person that makes sense and by extension gives us the power to turn down all those expensive things disabled people want like special education and elevators in school". The bottom line is that a bioethics of love or conservative view of disability is a giant step backward, pun intended. Disabled people have rights and when they assert them are disliked. Rittelmeyer wants to undermine hard won civil rights earned by people with a disability that are largely ignored and replace them with an expectation that we should "swallow our pride" and accept social dependency. I think not. In fact I can think of much more colorful language to express myself that would fit quit well within a locker room. But that is exactly what Rittelmeyer wants and I refuse to accept the bait and act the part of the uppity cripple. You see I have dignity. I have civil rights. Ain't America great that someone like me that has not walked in thirty years can wield a pen. I am feeling the power today.
The only family member I shared my political views with was my father. We were an odd pair when discussing politics. He was deeply and passionately conservative. He also knew exactly how much I deeply resented people seeing my disability first and humanity second. This, I told him, made my political views change radically. He respected my views but despised my politics. I felt the same way about his political views. I respected him but could not understand why he felt a man like Reagan was great. Reagan was great at giving speeches I told my father and deflecting the real aim of his politics: make the rich richer and the poor poorer. In reply my father would laugh and ask how this differed from any other man in a position of great power. In the end I learned how to respect political conservatives through my father. Since his death and the rise of the religious right this has become increasingly difficult. Thanks in large part to the influence of George Bush our country, always a conservative place, has morphed into a country where complexity is perceived to be bad and science is somehow not to be trusted. How we got to this state of affairs is way beyond my ability to explain. But here we are, a country of extremes where we seek out evil doers, George Bush's words not mine, and conservatives talk about compassion and love. This sort of talk makes my blood boil and sends my blood pressure through the roof. Thus I have taken a few days to calm down so I can write about an essay I just read by Helen Rittelmeyer entitled "Towards a Bioethics of Love: What Conservativism Can offer Disability Activism". The essay in question appeared in Doublethink Online and was discussed beyond the usual conservative avenues--in other words I did not go out of my way to get pissed off.
I do not know anything about the author. One article by her was more than enough for me to bear and I shudder to think of what else she has written. Based on her article and its tone her expertise in disability is restricted to the fact her sister has a genetic disorder. Her sister is as a result prone to seizures, non verbal with severe to profound mental retardation. In layman's terms, Rittelmeyer writes, her sister is a "10 month old mind trapped in a 20 year old body". I know of no one that thinks this way except for a few extreme transhumanists and thoughtless people that fail to acknowledge the humanity of all humans, those with and those without a cognitive deficit. It is clear the author loves her sister very much and unlike many sees no need to search out a cure for her sister's condition. I respect these viewpoints and wish they were shared by all. But we diverge when the author mixes the love she has for her sister with disability politics. According to Rittelmeyer bioethics and questions of disability are pressing and that she can "offer a conservative bioethics, one that sees love, not autonomy, as the basis of human dignity". Such sentiments mixed with politics are in my estimation nothing short of dangerous in large part because they conspicuously ignore the fact that disability rights are identical to civil rights.
The essay by Rittelmeyer does not begin to acknowledge must less accept a disability rights point of view. Disability is inherently bad, people with a disability needlessly suffer, are assumed to be in pain, physical and psychic, encounter endless adversity, and a diminished life. Moreover, disability is the defining aspect of an individual's life. There is no escape from disability. She writes "We cannot reduce a man to his disability, but neither can we look past it. Look past it to what? An imaginary person minus that disability?" Wow, no wonder disability rights remains grossly misunderstood by most people I encounter. At issue for the Rittelmeyer is dignity, human dignity, but what sort of dignity? Clearly, she and sadly many others cannot look past a wheelchair and see the human sitting in it for instance. This is the case despite the fact a disability such as quadriplegia is "less fundamental". What it is less fundamental from is not clear--perhaps her sister's condition? So what are people with a disability to do? In Rittelmeyer's opinion embrace conservative bioethics that require "the disabled and their families to show real heroism by accepting their suffering with some measure of grace and by swallowing their pride and accepting an unusual measure of dependence". Thus she goes on to note that "those who have had hardship thrust upon them have found some nobility in it"
Wow, civil rights and disability rights have been perverted in the name of love and conservative bioethics. The last thirty years of legislative initiatives, the independent living movement, and decades of activism have been replaced with an expectation that we people with disabilities need to "swallow our pride" and be "heroes". I see nothing heroic in having my civil rights stomped on. I see not reason to "swallow my pride" when treated like I am anything less than fully human. This is outrageous until I realized that some how "reasonable accommodations" have been transformed into charity and choice. The good person with a disability, the one with honor, accepts their stature in life: dependent, in need of hand out and happy for any societal largesse. The bad disabled person is one who demands equality: the right to get on and off a bus or airplane. Worse yet, expects to be able to vote, get into governmental offices and actually enjoy the fundamental rights all Americans take for granted. What Rittelmeyer wants is a return to an old era when people with a disability were trotted out a few times a year--Memorial Day, Veteran's Day, Mother's Day, etc.
Most troubling to me about Rittelmeyer's views is that she is familiar with disability issues. For instance, she raises a good point that some disability activists insist that disability is solely a social problem. That is disability activists are too closely tied to a rigid social model of disability. This point has been made by many within and outside the disability rights community. It is an issue, one that has not as yet been resolved. But this does not mean the social model of disability can be ignored just as the medical model cannot be dismissed. This nuanced point however is not going to be picked up on by the vast majority of her conservative readers who will think: "finally a person that makes sense and by extension gives us the power to turn down all those expensive things disabled people want like special education and elevators in school". The bottom line is that a bioethics of love or conservative view of disability is a giant step backward, pun intended. Disabled people have rights and when they assert them are disliked. Rittelmeyer wants to undermine hard won civil rights earned by people with a disability that are largely ignored and replace them with an expectation that we should "swallow our pride" and accept social dependency. I think not. In fact I can think of much more colorful language to express myself that would fit quit well within a locker room. But that is exactly what Rittelmeyer wants and I refuse to accept the bait and act the part of the uppity cripple. You see I have dignity. I have civil rights. Ain't America great that someone like me that has not walked in thirty years can wield a pen. I am feeling the power today.
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